What started as a personal journey of a doctor turned patient morphed into a way to share what’s universal in dealing with cancer, in my case a nasty leukemia (CLL), a failed transplant and a successful clinical trial. The telling of my journey has become a journey to teach about CLL, related blood issues and all cancers. Please visit our new website http://cllsociety.org for the latest news and information. Smart patients get smart care™. If you want to reach me, email bkoffmanMD@gmail.com

Thursday, October 17, 2013

Ups and Downs: Time to Under React Again

My blood count has gone from anemic to normal to anemic and
back to normal all in about two weeks.

My platelets remain nice and high near 400,000, my ALC
(absolute lymphocyte count) remains nice and low at about 1.0 Even at that low
count, the sensitive flow cytometry done six months still showed the cancerous
clone at very low levels. My T cells and the CD4/CD8 ratios are all healthy. My
neutrophils are normal and my monos are as always a bit high, a potential
marker of a recovering from a damaged bone marrow. But more on that story later.

My blood chemistries were all within normal limits. To all but the most astute observer of my labs, there is no hint of leukemia.

My wife says it’s the high iron in the blackstrap molasses
that she uses to bake Cajun gingerbread that has cured my anemia.

I say it was lab error that caused it. Or a lab variation.
Four different doctors and three different labs in two different states. I am
not expecting agreement, even on the basic numbers.

After years of these ups and downs, I am finally practicing
what I preach and underreacting to these blips.

My hemoglobin today at 14.2 grams is within one gram of
where it has been for the last few years – somewhere in the range of 13 or 14
grams. Long gone are the days of blood counts near the top end of male normal
15-17 grams. I have to go back to August 2009, about one year post-transplant days
when I topped out at 16.4.

In 2010 through 2011, while my CLL and ITP were advancing
and I was clearly a sicker patient than I am now, my Hgb jumped around 12.7 and
15, but for with a few exceptions, since Dec 2010, it has been mostly hanging
in the 13-14 range.

My bone marrow obviously took a hit with the
chemo-immunotherapy (FCR) for the conditioning for my transplant in July 2008,
but it was only one week and you’d think it would have fully recovered by now. The lowest it ever got post transplant was an
amazing resilient 10.2, to me a sign at the time that I had not been hit hard
enough with chemo and ATG (see my prior posts on this topic from the weeks
following transplant) to clear out my marrow of my own stem cells to make room
for the donor cells to engraft. Sadly my worries turned out to be dead on and I
rejected the graft and got none of the benefits or risks of the potent and
potentially curative graft versus leukemia, but on the good side, I never had any
graft versus host disease, and I have been never transfused. My hemoglobin had
started to climb and stay above 12 grams just 60 days post transplant.

Water under the bridge. Eight years with an aggressive CLL
and only one week of chemo in that time.

I think of myself as pretty lucky.

Ready to learn a little basic nonmalignant hematology? Don’t
fret. It’s easy, logical, and will help you understand your own blood counts.

For a long time I was slightly macrocytic (macro or bigger
than normal red blood cells or in medical talk, a greater than normal mean cell
volume or MCV for short). They are many causes for that finding including low
levels of vitamin B12 and folate, but the one that gets my attention
is a damaged marrow that can lead to a too common complication of CLL and its
old school chemo treatment, a nasty cancer deceptively named myelodysplastic
syndrome or MDS. CLL itself probably increases our risk of this secondary
cancer. So does FCR. The macrocytosis has been less of an issue recently, but
the reason may be my lowish iron (veggies have lots of iron, but it is not
easily absorbed as is the iron in a juicy steak). Anemia from low iron tends to
be microcytic (that’s right, micro or small red cells- you see that hematology
terminology is not that difficult). So when the red cells go through the automated
“Coulter” counter, some are too big and some too small, so the average is
normal. Hematologists have a few ways to look for that possibility and one is
even automated. They review the RDW, or the red blood cell distribution width,
a freebie and part of most CBCs (complete blood counts). When all the RBCs (red
blood cells) are the same size the RDW is usually in the normal range. In an
anemia of mixed causes, the RDW can be high. Mine is high.

But I am not anemic, so it’s all moot. Just something to
keep an eye on. Abnormal RDW and MCV are not often significant and don’t
usually deserve a work-up in the absence of anemia.

I walked you through this to help you understand how a
doctor thinks about these things, even when there are not “action items”. Just
sniffing the air, looking for trends that might portend future dangers.

In the meantime, I under react. Know our options, keep
exploring, and have a plan. Don't give up.

On an entirely different scale, for the second week in a
row, I have been rerouted on American Airlines coming home. Twice, first time in
Atlanta, next in Columbus, I have breezed through the TSA pre-screen security,
twice I was upgraded to first class, twice I has thinking this flying ain’t so
bad and twice my bubble was burst because twice, my flight was so delayed by
mechanical issues that I needed an entirely different route home. Today, due to
changing delays and missed connections, I was booked on a total of four
different air route to various nearby airports in California as I was informed that
there were absolutely no seats left on any flights to Orange County. I
didn’t have a ticket home until I left the secure gate and the overworked gate agents who by their own admission were in over their head, walked out past the TSA security zone and went to the American Airline ticket
counter where a smart agent nabbed me a seat home though Chicago instead of
Dallas. Not first class anymore, but who cares, I get home the same day.

Had I arrived at LAX as I was at one time rescheduled at 5:10 PM on a
workday, it would have added at least two hours and $40 for a “stop everywhere
on the way home” shuttle, so I am very grateful to the helpful staff at the ticket
counter in Columbus.

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About Me

BkoffmanMD@gmail.com
A family doc and husband of 1 and father of 4 and grandfather of 3 who loves his family and his work. I live with no TV and no microwave, but wouldn't last a minute without friends, art, music, books and the beach. Hockey, good jokes and exotic travel are pretty important too. Writing, Talmud and Zen give meaning to my life. My diet is organic vegan, often raw. I hope the blog makes the load lighter and the path both safer and more fun for those who read it or are going to similar places. I want to help. I crave your comments. If you are new to the blog, check out the portrait my son Will painted (it is the first post), and my very first text post.